Managing Stress While Facing an Unpredictable Future With Sarcoidosis

[Joachim]

“If you’re not nervous, you’re not paying attention.” – Miles Davis

Over the past few months, I’ve been documenting my visits to a new hospital, where I’m receiving a second opinion regarding my pulmonary sarcoidosis. Any treatments or therapies this team can offer would be welcome, though I’m doing pretty good for the most part.

Dealing with new doctors, a new facility, and new tests is stressful. Stressing about medical decisions can leave me feeling overwhelmed and shattered.

It’s been three years since my first spontaneous pneumothorax, and I can’t tell you how stressful my life has been since then. A year after the first one, I experienced a second one. Not too long after my second pneumothorax, I was hospitalized again. Without realizing it, from that point forward, I would be living with three times the amount of stress I had ever dealt with. It was all related to my survival. 

I don’t think many people really consider how stress affects those of us with chronic illnesses and disabilities. A lot of my stress has resulted from lifestyle changes. Many folks have probably experienced the same thing, because when you’re used to living and doing things a certain way, a sudden change can really cause problems. 

I remember when I had the first pneumothorax and was hospitalized for two months. All I could think was, “Will I be able to take care of my family again?”

Then, I had other questions, such as what happens now? What’s going to happen to me? Will my family have to take care of me? Will I be a burden? Is this my life?!

All of these thoughts, and then some, crossed my mind. And once my mind starts running in a different direction, it’s hard as hell to get it back on track. This can lead to post-traumatic stress disorder, as I’ve written about previously.

I wish I had access to someone to talk to while hospitalized. It’s definitely helpful to have support with this condition.

When I was first told about sarcoidosis, I didn’t know what it meant or what to make of the diagnosis. I felt fine, life was pretty good, and I was taking care of my home and my family. I didn’t know what to expect, if anything, over the years.

When you live with a chronic illness, you never know what’s going to happen. Every day brings new challenges.

I’d be lying if I didn’t admit that some days, the stress scares me. I’ve made some lifestyle changes that I feel are best for me. The stress and fear have allowed me to take a personal inventory of my life and what’s important to me. 

‘If you’re not nervous, you’re not paying attention.’

When I look at the big picture, the feeling of nervousness never really goes away. It just subsides a bit. I still experience stress, and some stressful situations cause mild flare-ups, shortness of breath, and all the other little gems sarcoidosis has to share. But it’s the way that I react to and deal with the stress that makes the difference.

Lately, I’ve been focusing on becoming more self-sufficient. Each day I try my hardest to take care of myself, rather than rely on others. What would happen to me if I lost my caregiver? That’s one of my daily motivations.

At the end of the day, I’m not as nervous as I used to be. I still deal with a lot of stress wondering what will eventually happen to me, but I’m more at ease with the thought. I now think about what can happen to me. If nothing else, I can become a better person. I’ve realized that stress won’t overtake me. I won’t allow it to interfere with my life.

I look at it this way: Since I’ve embarked on the journey with sarcoidosis, I haven’t given myself any bad advice. I’ve been there for myself when others have left, and I’m my own best friend and advocate because I have to look out for myself.

You have to be your main support person, because only you know what’s right for you. Be the leader that everyone follows.

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.

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